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Appt with Daphne Keen booked. Am I doing the right thing?

(7 Posts)
nothinginthefridge Mon 05-Nov-12 11:46:43

I've been off work for 6 months caring for DS (12) who has had some serious MH issues to deal with (saying he wanted to die etc), so will really struggle to meet the cost of the appointment.

So far I've been told by:-

GP - long discussion, yes she feels he should be assessed.
CAMHS - long discussion, yes he should be assessed.
Community Paed - long discussion, yes he should be assessed.
Old Ed Psych - long discussion, yes he should be assessed.

Paed started ball rolling. She got replies from:-

School (language resource) - no need to assess.
SALT (at school) - no need to assess
New Ed Psych - saw him for 1/2 hour at home last week - no markers, no need to assess.

DS has SLI and I have been told by the SALT that it often appears like ASD. DS also has dyspraxia, and I suspect SPD. Very poor working memory (below 1st centile)

DS lines things up, when playing with lego he doesn't make anything, he just makes pyramids (always).
He hates loosing at any game, we often have to fix it so that he wins sometimes.
DS repeats phrases from Friends, I think he thinks he is Joey!
He needs to rehearse everything over and over again....where are we going, who will be there, what time are we going, what time are we coming back etc, to the point I get exhausted with answering his questions over and over.
Takes things very literally, doesn't understand jokes or idioms.
Very strong sense of Justice.
Unable to control his emotions (swears terribly at school and home).
Has tic of rolling his head/neck.
Not sure whether this counts, but have lots of diagnosed family members (not close) who are on spectrum at varying levels. Close family members I suspect are on spectrum.

I've been told that we will have a 3 year wait in this area for the test (don't think new Ed Psych who sits on panel will even put him forward). DS will be leaving school by then.

I am desperate to know one way or the other, but feel like I'm going against the advice of school, SALT and EP. I feel I have already let DS down by not spotting his SLI until he was in yr6, and I feel I am trying to do catch up with everyone else who saw difficulties in their DC much earlier on.

Am I paying £750 to be told by Daphne Keen that he has SLI with autistic traits, which I suppose I know already?

Sorry to ramble.

KeepOnKeepingOn1 Mon 05-Nov-12 14:07:49

Fill in the CAST parental questionnaire and send it to DK before the appointment - I added extra info with lots of examples on separate sheets. Email works best. To DK directly rather than her sec.

Get together and copy all your documentation - if it's a big thick wad but well organised (so that you can find things immediately) you can take it to the appointment with you. You could also email other documents in advance so that she has read them before the consultation and they are available for report writing.

The consultation is itself diagnostic and given that DS is 12 DK will address her questions to him directly. I'm afraid I don't know what happens if they reply as DS was not able to (almost selective mutism).

Have a clear idea of what you want to achieve - obviously a diagnosis - but presumably the kind of intervention/placement you believe that DS needs especially if anxiety has been/is a barrier to attending school.

btw it is the comm paed not the EP who refer to ASD team for assessment. LEA EP who saw DS for statutory assessment didn't think that DS had ASD (or if he did the others in the class didn't seem to mind) but it doesn't matter what he thinks as a diagnosis from a medical consultant trumps his uninformed opinion. Also, if it helps, one comm paed thinks the diagnosis is wrong but another in the neighbouring borough suspects an ASD. DK is used to non-professional's having missed things.

Waiting for the final statement so I will let you know how much weight DK's report carried with my LEA.
smile

moleskin Mon 05-Nov-12 14:13:55

Yes I think you're doing right thing. I had app for dd2 back in Sept but cancelled it. Am kicking myself now as NHS has badly let us down and we are now left hanging

nothinginthefridge Mon 05-Nov-12 14:23:04

Thanks keepon. I think what I want the most is for something to be in place when he leaves school. I'm not sure what sort of provision will be out there for him with his SLI, but what I do know given that I have another DS in yr11 just going through career stuff, is that DS2 will not be able to cope with it all. He is in a good provision right now and I don't think they will change his placement there. He is making progress at school which I'm pleased about, although there are issues about his anxiety. School appear to be addressing them well though.

I have all his docs in a lever arch file so should be able to copy and send them fairly easily.

What I am concerned about is my memory. Does she ask lots of questions about what DS was like when he was younger? I remember some stuff, but unfortunately all 3 DC roll in to one iyswim and I can't remember who did what!

Will have a look at the CAST questionnaire now. Thanks smile

nothinginthefridge Mon 05-Nov-12 14:24:29

Sorry to hear that moleskin. Will you try for another appointment?

moleskin Mon 05-Nov-12 14:30:04

Yes we will in the new year I think. We live about four hrs from London and I don't drive so not easy to get to either. We were hoping NHS would pull through and they didn't!
Do you still have ds little red book from when he was little you may have some info in there you could use to jog it memory

nothinginthefridge Mon 05-Nov-12 16:46:52

Yes, I still have that fortunately, so lots of info in there, although I was never one to go and get my DC weighed every week. Went to the bare minimum (check up's usually) and if I had a problem, but not very often. DS was a complete handful, I had no car at the time and he is only 16mths older than DD, so 4 buses with buggy, nappy bag, baby in sling plus four year old didn't always appeal!

We're also about 4 hours from London so we'll probably need to stay overnight somewhere. Hope you get an appointment soon.

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